Months ago I had the lumbar puncture... ouch!. Cancer was found in the form of MGUS (an abnormal monoclonal gammpathy). For months I hovered on the Multiple Myeloma/Waldenstrom's Macrogammagloblomenia precipice... and then a month ago came the essential thrombocytosis diagnoses which could lead to acute myeloid leukemia (ahhh!} and other nasties! I then had three very rare disease potentials, with CIDP, plus diabetes... life was going down the tubes for me!
Then yesterday the oncologist tells me the essential thrombocytosis diagnoses was a mistake generated from a faulty platelet count in a lab test ( I was 434, not 834!) AND the monoclonal proteins of MGUS had disappeared from the electrophoresis screens.
Lesson learned: Don't skip ahead of your supposed death-callings using Wikipedia or old medical textbooks!
AMEN! JAN '12 I COULD NOT GET OUT OF BED! CIDP WAS A TERM I NEVER HEARD OF. WITH THE CORRECT DR. , DIAGNOSIS & IVIG AGGRESSIVE INFUSIONS, "DEATH DATE" HAS BEEN PUSHED BACK.......NEVER GIVE-UP!
I have been "stable" for well over a year now - my only medication is a daily dose of Imuran, no more IVIG. I can walk well without a cane or any other assistance, and can walk a mile on level streets.
BUT: I still have good days and bad days. Some days it is an effort to get out of bed, other days I feel pretty good. It is important not to get too "up" on good days, or too "down" on bad days. Learn what your body is capable of, and don't overdo it. But, also, don't give up on bad days!
I have been "stable" for well over a year now - my only medication is a daily dose of Imuran, no more IVIG. I can walk well without a cane or any other assistance, and can walk a mile on level streets.
BUT: I still have good days and bad days. Some days it is an effort to get out of bed, other days I feel pretty good. It is important not to get too "up" on good days, or too "down" on bad days. Learn what your body is capable of, and don't overdo it. But, also, don't give up on bad days!
I'm going through that cycle having just finished IVIg just 10 d ago. I felt terrific so I overdid it so it's back to minimum activity again till I recover. I just went through that emotional roller coaster you describe feeling exactly as you describe. Great insight and advice!
Great news. Thanks for sharing. Remember, the thoughts that we are thinking right now are creating the things that will we will experience in the days ahead. That is from the more mystical side of me. I believe it to be true though and a positive attitude is essential. God bless you and all those in this group.
I would add, even new medical textbooks. Tests and results can be flawed and we don't give enough credit to the body's ability to heal . I have learned it's not over until it's over.
Yeah, I too went through the Multiple Myloma scare it's the nature of the Beast. My Doctors spent months trying to find Cancer. A year ago this month I couldn't walk but After a year on IVIG and some hard work I'm walking unassisted. I find for me the more I press myself on the good days the less bad days i have. However I have those days when I have a hard time waking up or just want to stay in bed. So sometimes that's what I do. It seems to me it's about getting enough rest, the better I sleep the better I feel. Hang in there, and continue to Press on. May God Bless us All with a Cure.
Great news! Very happy for you. It's important to keep a level head in all things....life can change with every breath. I worry about this illness but then I remember I could get hit by a car on the way home today.....we don't know the future so may as well be optimistic!
Thanks for all the blessings and words of wisdom. Cured of two cancers in one oncologist appointment... man, that oncologist is good! Well, the mGUS is a devil I'll need to monitor until Father Time chimes for me.
A false diagnoses and I went crazy with self-piety and existential angst and saddening, gritty depression. I was really down and out. Then Wham-0, I'm suddenly cancer free.
Nevertheless, I now wonder how much mental and physical damage that misdiagnoses did to me. Oh, that molecular chemistry of the body is SO complex! None of us live a live of spiritual or health mastery from birth. I've concluded that CIDP and other autoimmune diseases initiate from trauma; either mental or physical or spiritual.
Eat well, swim, walk and meditate... and stop to smell the roses.
I was diagnosed with cidp in 2012. I had 10 Ivig infusions over 2013, none of which did much to improve the pain and lack of stamina. I recently found a doctor that uses K-LaserUSA( a non-invasive laser treatment for peripheral neuropathy) and my neuro felt it might be very helpful for my condition. The website is K-Laser.USA.com,the only problem.it is not covered by insurance. I am trying to save my money to get some treatments. I have spoken to several patients who are going through these and have said the results are amazing. good luck to you and I too have good and bad days ,but am looking forward to better days. Pumpkin
IF YOU HAD ANY BENEFIT FROM IVIG THEN IT WORKS, YOU MAY NEED A CHANGE IN DOSE, IV FREQUENCY OR A SUPPLEMENTAL IMMUNE SUPPRESSANT (LIKE IMURAN),
Laser for internal metabolic processes... the science is "iffy". I just don't see light amplification ( laser) changing the chemical cascade of proteins and chemistry at the millions of sites of myelin-axion damage. At the root of CIDP is a protein signaling of electrical-chemistry IgG that is defective. Again, just can't picture lasers working, but I'd need to try it... so, who really knows?
Pain, i take 4800 mg of gabapentin daily and still the foot feels like a lava flow at times.
It took 10 months for IvIG to works, in leaps and bounds and failures and transfusion. And, I even got arrested for terrorism because of IviG infusions... LOL
You might consider a second opinion from a neurologist.
Pumpkin said:
I was diagnosed with cidp in 2012. I had 10 Ivig infusions over 2013, none of which did much to improve the pain and lack of stamina. I recently found a doctor that uses K-LaserUSA( a non-invasive laser treatment for peripheral neuropathy) and my neuro felt it might be very helpful for my condition. The website is K-Laser.USA.com,the only problem.it is not covered by insurance. I am trying to save my money to get some treatments. I have spoken to several patients who are going through these and have said the results are amazing. good luck to you and I too have good and bad days ,but am looking forward to better days. Pumpkin
I have CIDP, Epilepsy, and migraine. My daughter has migraine and double sleep, my sister has MS but the docs say it’s all unrelated. I think they don’t know or won’t take the time to find the connection that seems obvious to me. What’s your gut reaction to my story?
estaban said:
Thanks for all the blessings and words of wisdom. Cured of two cancers in one oncologist appointment… man, that oncologist is good! Well, the mGUS is a devil I’ll need to monitor until Father Time chimes for me.
A false diagnoses and I went crazy with self-piety and existential angst and saddening, gritty depression. I was really down and out. Then Wham-0, I’m suddenly cancer free.
Nevertheless, I now wonder how much mental and physical damage that misdiagnoses did to me. Oh, that molecular chemistry of the body is SO complex! None of us live a live of spiritual or health mastery from birth. I’ve concluded that CIDP and other autoimmune diseases initiate from trauma; either mental or physical or spiritual.
Eat well, swim, walk and meditate… and stop to smell the roses.
I have CIDP, and also thyroid problems. When I asked my endocrinologist what caused the thyroid problems, she said, "Well, we don't really know for sure, but the general opinion is that it is an autoimmune issue somehow." Since that experience, I have noticed a good number of folks who communicate in this forum, and who also have thyroid problems. I suspect that is not a coincidence.
I wish I could take a survey of everyone with CIDP to see how many also have thyroid issues, or some other autoimmune disease.
Geepster said:
I have CIDP, Epilepsy, and migraine. My daughter has migraine and double sleep, my sister has MS but the docs say it's all unrelated. I think they don't know or won't take the time to find the connection that seems obvious to me. What's your gut reaction to my story? estaban said:
Thanks for all the blessings and words of wisdom. Cured of two cancers in one oncologist appointment... man, that oncologist is good! Well, the mGUS is a devil I'll need to monitor until Father Time chimes for me.
A false diagnoses and I went crazy with self-piety and existential angst and saddening, gritty depression. I was really down and out. Then Wham-0, I'm suddenly cancer free.
Nevertheless, I now wonder how much mental and physical damage that misdiagnoses did to me. Oh, that molecular chemistry of the body is SO complex! None of us live a live of spiritual or health mastery from birth. I've concluded that CIDP and other autoimmune diseases initiate from trauma; either mental or physical or spiritual.
Eat well, swim, walk and meditate... and stop to smell the roses.
Well I do have the MGUS running in the the blood. It was found in 2009, and has been confirmed to still be there every year since. I did research and like you did not like what I read, but listened to my doctor to. Although they were surprised to find it me at my age (47 in 2009) it is like my abdominal aneurysm, and will just have to watch and wait to see what happens.
But life is still good, I continue to wake up, I can still fish, and best of all I still have my wife of 31 years.